Hi, I have come to accept that I can’t go back to work after nine months off. I am just not well enough. My fatigue is severe and symptoms increase when I do anything much. Husband does all housework (except a bit of washing up), gets me to appointments, cooks 95% of our meals and even thinks for me when things are really bad. I no longer do any of my hobbies.
I was talking to the Scope helpline about my ESA and work capabilities and they said they thought I could be eligible for PIP. But my disability is invisible, I look OK, just really, really lazy! Oh, and rude when the pain and concentration issues stop me from observing the usual social niceties.
Has anyone else with ‘invisible’ MS been successful in getting it? I’m pretty sure the hassle of the Work Capability will leave me a gibbering wreck in a darkened room for a couple of weeks, I don’t want to add the PIP thing if it is pointless.
Not quite yet… but if they make me try to go back, I won’t last more than a couple of hours, so it’s just a matter of time. Haven’t been there that long so wasn’t even thinking about a payout. Not really sure how it all works.
You don’t get PIP because of a specific disability or disease. The DWP look at a whole load of everyday living ‘activities’ including preparing and cooking food, eating and drinking, washing and bathing, dressing, communicating, budgeting and others. Have a look at the Benefits and Work website. They have a self-test which you can try out to see if it’s worth making a claim: Take the PIP test
PIP is split in 2, Daily Living and Moving Around. Each has a standard rate and an enhanced rate. You need 8 points from the Daily Living Activities to get the standard rate, and 12 points for the enhance depth rate. The Moving Around part is the same, 8 points gets you standard rate and 12 gets you enhanced.
It’s always worth having a look just in case. And don’t worry about not having any big obvious glaring arrows pointing at you saying, this disease, that disability etc.
The thing is, if you take those descriptors individually then I can do most of them. As long as that one thing is the only thing I do and it doesn’t matter that doing it makes me ill. But the descriptors don’t allow for that.
Also, I’m still in denial myself, and keep thinking tomorrow I will be better.
The fatigue doesn’t feel like fatigue. It hurts a lot. And stops me sleeping. And gives me palpitations, nausea and tinitus and sets off my buzzing and electric shocks. My neck and jaw judder and my neck contracts so that I can’t lie down. Things start shooting out of my hands. But no one can see it and I can’t prove it. If I push it I get new symptoms, which makes me think that what is actually happening is that moving my neck is irritating the lesion and making it get inflamed and hit new nerves.
I haven’t had clean sheets for over two months, the bedroom carpet hasn’t been vacuumed in more than that, probably four. It’s disgusting and I hate living like this, but husband can’t do everything. His allergies are so bad due to the dust that he just sneezes and coughs constantly. If it wasn’t for him I would be dead because I cannot look after myself.
Can I cook a meal? well yes, occasionally. But most of the time if I am on my own it is a banana and some nuts, or nothing, because I know I need that energy to sleep later.
Even all this typing I have done today will cause trouble for me. Must stop even though it is too late now really.
The thing is with a PIP claim that for each activity you should be able to do it reliably, safely, repeatedly and in a timely manner. So it’s not just a simple matter of can you do it, it’s can you do it again and does it take you all day, etc.
Also, there’s no reason why extreme fatigue cannot be a consideration to a PIP claim. But the important thing here, is can you prove it. So, have you seen an occupational therapist and done some fatigue management stuff (and will s/he back you up in writing)? Is your GP aware of your fatigue, how it affects your daily living, and again, will s/he back you up in writing. It’s all these sorts of things that you could consider in the light of a PIP claim.
It’s not what you say, it’s what you can prove. And added to this is how you appear in an assessment.
So have a look at the Activities and Descriptors in a bit more detail, really think about what you can and can’t do and consider what you can prove. You kind of have to forget what you can and/or do in the way of housework, it’s all about personal care and mobility.
Ah OK, so not being able to keep your kitchen or bathroom hygienic doesn’t count as personal care. I did think the person who told me was being optimistic. I won’t apply then. I didnt really know that much could be done for fatigue, so Ill flag it up with GP. Physio asked me how I managed it and I explained I use my walking app to warn me when I need to have a long rest, and we’re getting rid of our heavy plates etc and moving things to more accessible places, but I can’t think what else I can do.
How would I get to see an occupational therapist? No one has mentioned it. Maybe once I am on my DMT my MS nurse will talk to me about symptom management.
In general the best advice for fatigue management (it seems to me) is about pacing yourself. Doing things bit by bit. And resting. Not going out every day. Making other people do their bit with regard to housework, especially picking up after themselves. Making sure you have the right items available in the right part of the house.
And once you get an MS nurse you can ask for a referral to occupational therapy. I don’t know if it’s very unusual, but in my area there’s a Community Neurological team. The MS nurse is attached to the team (when the new one starts, we’ve been without for quite some time), there are physios and OT. The bladder and bowel nurse is kind of attached but not really part of the neuro team as she does other areas as well (we used to have a dedicated continence nurse but no more). So if I were to want the OT, I could phone the team and self refer. Otherwise ask your GP to refer you.
Its not pointless trying to get the help you need, a lot of people get PIP and ESA if they’re well informed about the requirements for qualification without any dramas. If you qualify for the personal care component of PIP you might also qualify for carers allowance.
Read as much as you can online about PIP and be as aware as you can be before trying to claim it, if you’re going to find taking it in difficult get your partner/husband/wife or a family member or friend to help read it all. Try not to read the scare stories they’ll only put you off!
You said that when things are bad your husband even thinks for you, this may also give you additional points towards your claim.
Think about who will be able to provide evidence to back up your claim.
i would also try to find a benefits adviser like the CAB or someone from a neuro rehabilitation team or MS nurse.
before filling in the form write down the answers to all of the questions while you’ve got time and no deadline to meet.
it also sounds like you might benefit from some disability aides around the house like a perching stool or kitchen gadgets, I think you probably need to see an OT.
best of luck if you claim if you qualify, you’ll get it.